As the population ages, patients seeking care for multiple chronic conditions has become the norm. Sixty percent of Americans die following a prolonged illness; the “compression of morbidity”—the burden of disease and disability limited to a brief time before death—has not yet become a reality in the United States. The care of persons with serious chronic illnesses like cancer and heart disease then often falls to families whose members absorb the burden of a loved one’s needs, with negative effects on their work, finances, relationships, and community engagement.
Palliative care focuses on improving the quality of life for people with life-threatening illnesses by involving a team of nurses, doctors, social workers, and clergy in a care plan. From its inception nearly fifty years ago, palliative care was meant to provide a system of support for the families of the ill, as well as the patient. Hospice care—in dedicated units and in services at home—has been slowly expanded over the past two decades, but the increasing percentage of patients who use hospice for less than seven days suggests that the full benefits of end-of-life palliative care are not being realized.
Meanwhile the use of unwanted aggressive end-of-life care, often inconsistent with patient preferences, remains pervasive. Palliative care programs were designed to help clarify patient wishes, relieve suffering, and improve quality of life throughout an illness, not just at the end of life. Most palliative care is now delivered during hospitalization, when it should be shifting to the community earlier, relieving families from carrying the burden alone.
Community services are currently limited by small numbers of workers and misdirected reimbursement mechanisms; corrective policies are slow to materialize. The Palliative Care and Hospice Education and Training Act has finally been approved by the House of Representatives and has recently moved into Senate subcommittee for review. It would increase the number of professionals trained in palliative care techniques.
But there are other obstacles to progress. The primary one is cultural. When the co-founder of Google announces that he hopes to “cure death,” when we believe immortality is achievable through bio-hacking, when the entrepreneurial class chases anti-aging diets, exercise regimens, and technologies, palliative care becomes an admission of failure. Just as Americans have low rates of completing living wills and choosing medical surrogates, they receive few medical referrals to palliative care; doctors notoriously overestimate how long terminally ill patients will live.
Palliative care was not created only for the terminally ill. It can be administered to those who will eventually be cured of an immediate life-threatening condition. But it must equally be delivered to family caregivers. The public health issue involves not only patients, but also their families who face material and psychological challenges and require a comprehensive strategy.
For any public health strategy to be effective, it must be supported by government policies and insurer incentives, but owned by the community, which must continue to ask for help in designing and paying for high-quality palliative care for patients and their caregiving families.
Warmly,
Michael Stein & Sandro Galea